One Book

Now that my daughter is a big first grader, she doesn’t bring that much art home from school. Most art is done at home. She incorporates themes using whatever she’s into at the time. Right now it’s fairies. But with any theme, there’s always an impressive level of symbolism that bowls me over. She’s not afraid to express herself through her art. It gives her a safety net to say things that are a little too tough to verbalize.

I like it when she draws a picture of our family and she includes Jay. She always used to include him, then stopped when it got too overwhelming. He returned for a long time, and now he’s gone again.

The reason I haven’t seen him in awhile isn’t because it’s too sad to include him. It’s because he’s been gone too long now. We still talk about him. His pictures are still up. His ashes still sit in our bedroom. But the memories she has are very slowly fading.

It’s funny being a parent. There is so much history you have about your children that is forgotten to them. All the years I chatted with her while nursing, changing her diapers hundreds of times, putting her down for naps, all of that is gone for her, but still with me. I’m watching time go by in a different way, and I’m watching memories slip right out of her head that I will always hold in my heart. In 10 years, she will barely remember Jay at all. She will have a million memories with Floyd, all going well.

And is that bad? That’s a tough one. It is very sad that this beautiful, smart, funny, gentle child we had will be largely unknown to her. But if I had to choose how my sweet daughter would lose a brother, if I had the power to dictate how much or how little pain she would experience over the loss of someone in her immediate family, well, then this is the way to go, I guess. She will always carry that loss. It will always be a part of her life story, but it won’t be her whole story, and it won’t ever be as big a story for her as it is for me. I will take that any day. For Floyd, both Jay and my mother will be complete strangers. I wonder what it will be like for him to grow up knowing he has a brother who died.

Even I have changed. When asked, I say I have two kids. I was militant for awhile about always saying I had three, but it got so cumbersome and uncomfortable that I finally stopped. What I was really doing was just acknowledging his existence, but people didn’t perceive it as such. I think they thought I was trying to rehash something or bring them into my traumatic experience, and I didn’t want any part of that. I mentioned it the other day to someone at the gym when they were talking about kids falling. I regretted it as soon as I said it. A friend asked me h0w I was doing on the grief thing. I said, “I don’t know…I mean, I’m more dealing with the after effects of losing two people. The anxiety follows me around more than the sadness does at the moment.” It’s actually easier dealing with the sadness. The sadness is a heavy weight, but it’s a feeling that’s anchored in a past event. Anxiety is rooted in fear of the unknown, and is much more unsettling 2+ years in. When Jay first died, the sadness was so completely encompassing, like being swallowed by tar. But the sadness isn’t like that now. Sometimes, no, many times, I look at his picture and I’m astounded that we had a life with this little person who will never be ever again. It feels foreign. Who was he? Who would he have become? I think about how well I know Floyd, who is now almost 8 months older than Jay was when he died. As Floyd gets older, I will continue to understand him better and know more of his little complexities. My understanding of who Jay was…will it change or be stunted because he will always remain a baby? It’s impossible not to romanticize the future, but that’s a dangerous (and wildly inaccurate) game to play. Who knows who Jay would have been? Whatever I imagined him becoming (a rollerskating, peace-loving, shirtless kid selling pot brownies in Golden Gate Park — just being honest) he undoubtedly would have been different. Child-rearing is chock full of surprises; about half of them not being good ones. And yet my mind cannot stop imagining various fantasies in which I heave pretend futures onto a 13 month old personality. So yes, it will be stunted. Jay’s life was a burgeoning 500 page novel that stopped progressing on page 5. There is no “how did the story end?” because the author just stopped writing. No outline was left. It’s just not there.

There is a special layer of guilt over the fact that we lost a son, a younger brother to our daughter, a child who was gentle, loving, funny and kind, and we now have just that at home with us right now. Do I consider myself lucky for that? I do, as hard as that is to say. We could have been unable to get pregnant again. What if the baby had been a girl? I would have loved that girl with the heat of a thousands suns, but it would be crazy to say that I wouldn’t have crumbled every time I walked by the boys’ department in a clothing store. We lost a lot when we lost Jay. But when we were able to conceive again and have another boy, we got a couple of things back. It’s hard to admit that having Floyd was healing.

The other night I went upstairs into our TV room, which, as we have a bunch of construction going on at the moment, has become the “screw it, there’s nowhere to put this so let’s just bag it up and put it in here” room. I was looking for something and found myself alone, in this room, sitting on the couch in complete silence. I whispered to myself, “He’s dead.” I do that sometimes. The world gets busy. My head gets busy. When I whisper it, it makes it real. I have never said those two words about him out loud to anyone. I can tell you he died. The word dead, though, that’s something I just do alone. It carries a different weight. I talked to Jay that night. I hadn’t talked to him much out loud in awhile. I said things that I hadn’t said to him in a long time. I talked about Floyd. I talked about the things they had in common. I talked about how special they both are. I told him that I would always be his mama. I found myself wanting him to know how much I loved him. I didn’t want him to feel replaced.

Sometimes I feel guilty about how much I love Floyd. But all I can do is love the hell out of the son I hopefully get to keep for the rest of my life. Sadly, it’s impossible not to feel guilt about my love for him, or the fact that our lives have moved forward. The pages in all our novels continue to be written, and Jay’s book is done at page 5. We can’t change anything. We will all just love each other, and live as long as we can, all while holding a teeny 5 page book close to our hearts forever. In the end, we’re all in the same book together.

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The Worries: Part 2

Oh, thank Christ.

Two years ago a dermatologist thought my daughter might have neurofibromatosis, or NF. It’s a terrible genetic disease that neither me nor my husband have. Even though the diagnosis didn’t really fit, even after a physical examination, we were still referred to genetics for “counseling”. I put it off for two years because it just seemed like bullshit.

To make a long story short, we finally went to the appointment after I dove down several internet rabbit holes. First, I talked privately to a genetics counselor who wanted to know all about my and my husband’s family history and how everyone died, and then the department chief of genetics examined my daughter. In as many words, the doctor pretty much said, “OMG are you kidding? She doesn’t have NF. That’ll be $45.00.” We then joyfully drove away, but not before the genetics counselor told me that if I wanted to get tested to find out my chances for getting breast cancer, I could make that appointment any time. Thanks for that, lady. Whatever. I told them I would schedule a mammogram. I’m 40 and a half and just weaned my third child earlier this year. We’re just getting over this NF scare. Give me a minute before I leap tits-first into the mammogram machine. I can’t wait to get the mammogram and then shit myself for a week until I find out the results.

We arrived back into town from this NF appointment and I dropped my daughter off at school. I returned home at 11:30am and cracked open a beer. I know, it’s not even noon. I haven’t even had a beer in forever. It just tasted so good and it was so nice to find out that everything is OK.

 In this situation, an overzealous dermatologist sparked a marathon of worry and panic, and I’d like to think that most parents would be quite worried had this happened to them. The difference between me and another mom would be that the second the whole NF thing passed, my mind went to another worry. Like water slipping into the next available crack. Also, when you’re a level 10 worrier,  it’s hard to know what’s “normal”, especially when faced with a situation that’s legitimately concerning.

 Instead of worrying about what hasn’t happened yet, I should concern myself with the problem in front of me everyday.  I should worry about the fact that my anxiety takes me away from the things I cherish the most in this whole world. I have the present day to be thankful for, but as I continually look into the past and possible future, I can’t stay in the moment. I’m so worried about being robbed of my future that I can’t stop robbing myself of today. This anxiety is deeply rooted in the concept of control. If I worry so much, it won’t happen. It’s a lie I tell myself even though I know it isn’t true. It’s a heavy set of handcuffs that stops me from enjoying every good thing I’ve got going on in my life today. What a huge price to pay for the illusion of control. Until I give up that illusion, I will always be in those handcuffs. I will never be free.

 My daughter’s school hold weekly mindfulness trainings for the students. Things have really changed since I was in the first grade. I routinely talk with her about how to stay cool in the moment, practicing breathing exercises with her that have been sent home by the school, all the while being completely unable to stay in the moment myself. Children in general are pretty great at living in the moment, and grieving children are no different. As soon as things get too crazy in their heads, they’re off playing dress up or immersed in a book. Overwhelming feelings are scary for a child, so when it gets too much, they’ll turn it off like a light until later. Adults aren’t quite as adept at doing this.

 I decided several months ago to begin an easy mindfulness practice anytime I got overwhelmed. Please know that I still suck at this. But, when I can manage to do it, it really does work. It began when I would drop my daughter off at school. It was during a time when I felt particularly anxious, and after the hustle and bustle of the morning school routine was over, I would feel overcome with fear of something else happening to our little family. I hadn’t even exited the school parking lot when it began and I didn’t know how to turn it off.

 I whispered aloud to myself, “What are you doing right now? What exactly are you doing?”

“I’ve just dropped my daughter off at school”, I answered.

“What else? What else is happening?” I was thankful that anyone who saw me would assume I was speaking to my son in the backseat.

“I’m driving home. Floyd is in the car.”

“What else?”

“The sun is shining. It’s a beautiful day. My husband is home working. We might have lunch together. Everyone is safe and happy.”

“Anything else?”

“No, I’m just driving down the road right now. I’m going home. We’re just in the car going home.”

 I kept going like this until I felt better. By forcing myself to live in the moment, I was able to appreciate the good things happening all around me. When people ask me how we’re doing, I tell them that we’re doing well, and it’s the truth. My head notwithstanding, everything in the present is fantastic. As anxious and fearful as I can get, I’m not a quitter. Me living out my days in an anxious ball of fear is not acceptable to me. I’m just a couple years out from losing my son, but I already know that this can’t be my forever. I have a lot of work ahead of me, but I’m going to make it. We are all going to make it.

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The Worries

Some people take life as it comes, worrying about something when there is a clear, imminent risk of something crappy happening. I envy those people with all my heart. What it must be like to go through life not constantly thinking of what could happen. That sinking, heavy feeling of anxiety not expanding in your chest all the time.

I have always been a worrier. Many of my close friends and relatives have spent plenty of time teasing me about it. After Jay died, a lot of the teasing stopped. It was like, “Oh shit, the worst really happened to her. She might be onto something.” Right after he died, there was the anxiety of being under investigation. That fear was so suffocating I couldn’t even grieve for my son until that was over. People would listen to me talk about the investigation in the early days, and I think they wondered why I was so out of touch with the fact that my little boy was dead. I didn’t know what else I was about to lose. I couldn’t live in the moment when there was still so much more at stake. Once that chapter closed, I was finally looking grief in the face for the first time. So, I can’t say the clouds parted into blue skies that day.

Things got better for awhile. I had hope. Then slowly, over time, the anxiety returned. It wasn’t like my worrying before, which used to just center around what was going on in my world and would be a temporary inconvenience. I went from being “a worrier” to “someone that has some anxiety issues.” I’ve talked about it before in this blog. Sometimes it gets revved up to this fevered pitch that I can barely control. Other times it’s completely manageable. Being distracted helps. It works like a record player. My record will play along just fine for awhile, and then my needle (which apparently is ultra shitty) starts skipping. The skipping goes and goes and goes until something distracts me and the needle gets gently set down again. The song continues on until the next skip.

These skips can be reset literally overnight, or even in a moment. Someone will say something or I’ll read an article that puts things back in perspective. The fortunate thing is that it’s not hard to reset the needle. The unfortunate part is that needle will skip on a dime, so I can reset it, feel great, and an hour later I’ll be back in worry hell. It’s one of my least favorite parts of me and it’s embarrassing, but it’s the truth.

This week the skipping of my record has been jacked up to ridiculous status. A possible health issue for someone in the family has cropped up as a scary concern.  We learned about the possibility of it a couple of years ago, and since this news was first dropped on me a cool 5 months after losing Jay, I just set that information in the recycling bin of my mind and went on managing the tornado that was our life back then.

Skip to later this week, when we have an appointment with a doctor. She will do some more investigating and possibly send us off to a specialist. I apologize for being vague, but I hope you can understand that while I wear a lot of my life on this blog, I can’t wear it all because other people’s personal business needs to stay just that, at least for now. It’s not a life or death situation.

This all has led to my record skipping like a motherfucker. Did someone scratch up my LP?!?!

One thing that has helped me is reminding myself that the family is all in this together. I’ve seen what we can do. We have overcome more than one tragedy and we have done it with flying colors. It really sucks to have your strength tested like that, but we all got A’s.

However, I’m tired of having my strength tested. I just want to relax, man. We lost our son, we lost my mother, and I’m done with tragedy now. Thanks for the strength testing, we did our part. I don’t want to say go bother someone else, but we’re good. Being strong is tiring. My record is skipping because I’m always afraid of what’s around the corner. You can call me paranoid, but I’ve seen enough corners to feel like it’s never ending.

This week will pass, and we’ll wait to hear back from the doctor, and if they want to investigate further, we’ll enter the next step of testing. Then, if we get a definitive diagnosis, we’ll have to jockey for position, become strong again and trudge on. It will be a constant battle of resetting the needle.

If it turns out that there are no health issues, I’ll sheepishly chide myself for getting all riled up. And that’s good. I need more instances where my silly little worrying was all for naught. That helps me have hope. It smooths out that needle a little bit the next time a worry comes along. But if my worries are founded, if we’re given yet another pile of rocks to carry through life, I’m going to be terribly saddened. I had almost 40 years of fairly carefree living before the rug was yanked out from under me. But my sweet girl had only 4 years of life before being handed a weight no child should carry, and then another weight 18 months later. I know life isn’t remotely fair, but she’s the person in my world who could really, really use a break.

I look at Floyd all the time, with 20 months of life under his belt. He enjoys a completely carefree existence. It’s enviable. I hope that lasts for a long, long time. But however long it lasts, whatever we learn from the doctors, no matter what comes at us, I will do everything in my power to convey to my children that we can do this. No matter how tired and frustrated I get that we keep getting dealt shit cards, I will never stop going to bat for my children. My only real job in this life is to send my children the message that you can not only survive, but thrive until your last day. It’s true because I will make it true.  It would just be so much easier with a better record needle.

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The Visible String

Once we lost Jay, my first priority was to do everything I could do make sure my daughter was OK. I called a psychologist I knew and had a phone consult. She had me write down a list of things to do: Get some good books about grief. Read them first to make sure they aren’t horrible (there are some real trainwrecks out there), buy a mini ambulance and some dollhouse furniture so that she can reenact the accident through play. Get her some therapy.

I started with the books. I read through several of them that I truly thought were awful. There are a few that I really like, and they’re linked on my site here. I haven’t read every children’s grief book, and if you find one you really love, please let me know.

One book we enjoyed early on was The Invisible String. While it does mention Heaven one time, it’s not a religious book. It explains how we are all connected by an invisible string no matter how far apart we are (even in heaven). The invisible string is, of course, love.

While my daughter really likes this book, it’s hard to read. Books about death are not ones your child can read every night, so don’t expect them to be able to delve down into their saddest, most vulnerable beings minutes before you turn off the lights and jet downstairs for a king size glass of wine. She likes to do it when she’s thinking about her grief but is strong enough to handle it. Read it once and then put it away. If they’re 4 years old or older, they’ll see it on the bookshelf. When it’s time to pick a book, they’ll choose it when they’re ready. If they don’t choose it, don’t push it.

One issue with the Invisible String is, well, it’s invisible. That might go over well with some kids, but my daughter isn’t jazzed about believing things she can’t see. She waffled between loving the book and thinking it was a pack of lies. At one point I thought she wasn’t going to pick it anymore. And then months later, she’s pulling it off the shelf for me to read to her.

Yesterday we came home from dinner and did our nighttime routine. I told her a story instead of reading a book. Afterwards we said our goodnights. Lately we’ve been having issues with her coming down repeatedly asking for water, because she’s scared, or she misses me. Tonight she missed me.

She took dozens of feet of yarn and gave it to me to hold onto the entire night. It was the Visible String. It wasn’t enough to know that I loved her and that I was nearby. I tied the string to my belt loop while I finished some yard work and did the dishes. It felt a little like being on house arrest. It kept breaking, getting caught on things, and she kept coming downstairs to tell me she missed me. It was an hour past her bedtime and I was starting to stress out. She has a cough and now she’s missed an hour of sleep because of this string project.

At 8:30 she came down a second time to tell me she missed me. I reassured her that I was just right here and I was dutifully wearing my string. She also wanted me to have the baby monitor right next to me, which didn’t work because it needed charging. I walked her back to her room when I noticed that she was busy trying to untangle the giant string for the 12th time.

“Go get in bed and I’ll unravel it as you go!” I said impatiently. She slowly made her way to bed.

“But mama, will you still hang onto your part?”

“Yes, of course! But I need you to go to bed. Please, you’re getting a cold. Just go to bed.” I knew she could hear it in my voice that I was losing my patience. We were right by my son’s room, so everything I said was in a whisper-yell.

She turned off her light and got in bed. I had to untangle the blasted string yet again and walked back to the kitchen. The string caught on something and it broke. I turned around and almost went to get it, then stopped. “Screw it!” I whispered to myself.

I sat at the computer and did some writing. I kept looking back at our Visible String, broken on the living room floor. I felt like a terrible mother for getting mad at the continual trips downstairs because she missed me and her need to make sure the string was working.

After several minutes, I walked back to the living room and, after untangling it from my son’s toy truck and the cat scratching post, re-tied my string. Then I picked up another piece that had broken off when I tried to make it stretch to the toilet and added that back on so that I would have more room to move around the whole house.

Visible strings are a pain in the ass. So are invisible ones sometimes. Every parent makes mistakes, but it feels so terrible to make one as a grieving parent with a grieving child. I wanted to run upstairs and tell her that I still had it on, and that I loved her. I gathered as much of my string as I could and tiptoed to her room, knowing full well what kind of a string-tastrophy this was going to be on the return trip. I poked my head into her room.

“Are you OK?” I whispered. No answer. She was asleep. My heart sank. I felt like I missed this opportunity to hold these anxious feelings for her.

I walked back to the kitchen, untangling my string on various object as I went. The string went almost to my own bed, so I left the string attached to my jeans and put them on the next morning before I woke her up. I wanted to show her that we were attached, and that I took it seriously. She seemed surprised I still had it on. We had it connected over breakfast and after I took something out to the recycling (yep, it was long enough to stretch out there, too) I told her I should probably cut it now. She saw that it got stuck outside and I couldn’t go with her to brush her teeth until I had untangled it from a mint bush outside and also our front door frame.

“Oh, I already cut my part off,” she said. I was relieved.

“Really? Oh!” I took some scissors and cut the multiple knots off my belt loop where I had tied and re-tied them over the last 12 hours.

“But you should keep the string,” she said.

“Oh, I will, baby. I’ll definitely keep it.”

Now the string is carefully wrapped up on the counter. I want to put it somewhere where I see it regularly. It’s a reminder of the fact the tangible is just as important as the intangible. It’s a reminder of how much she needs me and needs to know I’m there. And when a string breaks, always, always go back to re-tie it.

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Diet God

When your child is brain dead and you decide to donate their organs, there comes an actual moment when you walk away from them forever. They’re in the hospital bed, breathing (with assistance of a machine), heart beating (on it’s own accord–that’s a rough one), and you say goodbye. You get in your car and drive off to a brand new existence, one that you can’t even imagine yet. Meanwhile, they stay there, without you. Do they know you’re gone? No, I don’t think so. But you know it.

The day after we did that very thing, I had to call my daughter’s preschool and tell them that our son had died. I didn’t tell them that his heart was actually still beating that day, that he had one more day of heart-beating status. I couldn’t go there. I told them that we were out of town, that my son fell back in a chair, and that he died. That one sentence story has become my script for when I have to tell people what happened in just a few seconds. While on the phone, I was standing in my mother’s back patio so my daughter wouldn’t have to hear this conversation. I was put on speaker phone in the school office. I noticed because the next words spoken on their side were echo-y and radio-like.

“Oh honey, he’s fine! He’s an angel now!”

About a million “what the fuck”‘s went through my head. I’m lucky in that I haven’t heard that again since that moment. I couldn’t even believe that of all the possible comments that could have come out of that person’s mouth, they chose that one. I was astounded at this woman’s complete inability to respect what I had just said. I was thrown a platitude less than 24 hours after I’d left him. If you want to bring God into the mix this early with someone who has lost a child, the only reasonable response is this:

“JESUS FUCKING CHRIST!!!! WHAT?!?!?!”

Let me be clear: I’m not an atheist. I’m not even an agnostic. I believe that there is more to this universe than we can perceive with our tiny minds. I think if anything is a sin, it’s the presumption that we actually know the answers, and that our story of religion that we were taught is the right story and that other people who were taught religion somewhere else have the wrong story. When it comes to faith, smug confidence is a bit of a naive way of moving through life and the world.

While I feel confident in my belief system that we can’t possibly know what is beyond our realm of understanding, this “faith” is not that comforting when you lose a child. There is absolutely nothing I would love more than to know that Jay is actually somewhere being taken care of by my mother and all my other relatives. To be reassured that he really, truly is fine and happy and that I would see him again would be nothing short of utter peace.

I know plenty of people who completely believe this to be true. And why not, right? If you have that faith, keep it. I’m not here to tell you it isn’t true. You might be right! I’m just not wired that way. A lot of us aren’t wired that way. When you don’t have faith, you’ve got to find something else to hang onto, because without God, things can get pretty bleak. Without that extra foothold, it’s pretty easy to go down a rabbit hole.

How do you move through the world without God when your child is dead? Do you feel like you need a story about where your child is now, or are you OK with the idea that they simply ceased to exist, their soul/personality/spirit is just truly gone?

For those who have complete faith in heaven and Jesus Christ, I call that full fat God. They drink the whole thing down and it’s the best tasting God there is when you’ve lost a child.  Your child is sitting on Jesus’ lap and they’re having an awesome time. Other parents who aren’t as religious, but still believe in God, might not be able to drink down full fat God. They go for Diet God, meaning they believe in an afterlife, but maybe the pearly gates and stuff is going a little bit far, but in the end they hope to be reunited with their lost loved ones. These are the “spiritual but not religious” folks, the “Nature is God” club, or any other philosophy that basically says, “I believe in something, don’t know what it is and I’m OK with that.”

Then there’s God Zero. There’s no afterlife. When you’re dead, it’s like a switch on a robot. You’re off and you’re not coming back on.

I have a hard time with the concept of things being gone. Where did it go? I wrote this post last year about the idea of things just being nowhere. It’s one of those questions that will bob around my head for the rest of my life. Maybe a scientist could sit down with me and plainly explain how something like the essence of a person can cease to exist, or maybe just someone with more than a 2nd grade understanding of biology, like myself.  I don’t think I would listen, though. I can’t. I want him somewhere so bad. I don’t know where he is, whether he’s in a heaven, or floating around as energy in a billion different tiny places at once. I don’t want to know the science of it, and I can’t imagine him sitting on God’s white-robed lap. But I want him around too bad to be fine with him being nowhere. I understand why people find God after losing a child. It’s a much needed dose of hope and reassurance that, after all that’s happened, things are still OK. That’s what we as humans always want to believe, isn’t it? I can’t drink God Zero. Gimme some of that ice cold Diet God.

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A Few Questions For The Pros

That’s right, this is for the pros; the people who lost kids a few years ago, maybe even 30 years ago. You’ve gotten pretty good at the whole grief thing. You go on vacations. You go out to restaurants and the only thing on your mind is whether or not you want to order an appetizer or just get right to it. You have a couple glasses of wine and the conversation doesn’t turn into a puddle of tears about how you’ve failed your lost child. You move through your days with  your child always in your pocket. While before it felt like a giant jumble of keys in your front pocket that stabbed your thigh every time you walked, now it’s a smooth-yet-overfilled wallet in your back pocket. You can always feel it, but you can sit down comfortably and if you had the chance to take it out of your pocket, you wouldn’t.

There’s always the little things that still get us. Currently, for me, it’s the new Julia Roberts movie. Her daughter dies. I’ve seen the preview a few times already while in the theater to watch something else. It hurts to see a child die, even in a movie. But while that’s probably the biggest thing that rattles me, the part that really nails it in is  how they made Julia Roberts look after she lost a child. I don’t think they had any idea how right on that was. Hair semi-combed, no makeup, washed out face, aged 10 years, all rolled up with a serious ‘no fucks given’ attitude.

I had to see the preview a couple of times to notice that was me. It’s been me for 2 1/2 years now. I spent so much time and effort trying to make my daughter OK and trying to get some normalcy back into my life, that a lot of other shit just went out the window. I’d routinely leave the house to drop my daughter off at school without ever looking into the mirror. Teeth unbrushed, hair uncombed and the previous day’s mascara camping out under my eyes was just a regular morning for me. And it wasn’t that I was just too busy and I didn’t realize it. I sincerely didn’t care. If you think about Maslow’s Hierarchy of Needs, I just wasn’t far enough up on the pyramid to be able to give a shit on that level.

I sat at this level for a good while. I needed to be there and I don’t think I had the wherewithal to even know what was missing. Also, when you spend so much time trying to be OK, you often aren’t paying attention to the parts of you that are still plenty fucked up.

For the people who have been grieving for a long time, my question for you is: What areas of your life are you still fucked up?

I’ve already told you about my lack of hygiene in the mornings, but I’ve got a few other fucked up things happening concurrently. One of them is that I can’t ride in the car with my husband without being in a panic. I’m convinced we’re going to die in a car crash. I gasp and yell “Watch Out!!!” when I think a car is getting too close to us in the other lane. I jam on imaginary breaks any time he has to stop short. I’m a real treat to ride with.

Things are better now, but I spent at least 9 months thinking about death all the time. Any time I made plans to do something fun, the thought would be followed by, “I hope I’m still alive by then.” When people would talk about their kids graduating college I still think, “I hope my kids live long enough to go to college/get married/have a family.” Those thoughts are as automatic as breathing to me, and I hate it. I’ve developed some special mind tricks to get me out of that thinking, but at the end of the day, there are no guarantees, so there isn’t anything solid for me to convince myself that the worst won’t happen.

It’s comforting to speak to people who have lost a child because there are so many emotions and experiences we have in common. Grief is an extremely individual experience, but it’s also really generic at the same time. My second question for my long-time grievers is: Would you be interested in chatting with other people who have been grieving a good while? What would you ask? What would be comforting to hear?

For a long time I’ve been toying with the idea of having a few people over at my house to discuss grief. I would make it a once a month occurrence, have a couple of topic questions and just see where it goes. I never went to a Compassionate Friends meeting because it never worked with my schedule (and if you don’t know what Compassionate Friends is, click on that link). I was also afraid of who would be there and what state it would leave me in. I joined a few Facebook pages that left me wrecked. No one had any hope. I can’t live that way. If I run my own meeting, I can guarantee there will be some hope. I never get a lot of comments on my blog, but, anyone have any thoughts?

Alright, I need to go take a shower. You know, the whole hygiene thing.

Posted in Finding Support, Staying Alive | Tagged , , , | 1 Comment

This is For You, Newbie

Someone commented on my blog yesterday who lost their 2 year old only 2 months ago. They are also 30 weeks pregnant. I was at my daughter’s school and she was begging me to stop looking at my phone and watch her on the monkey bars, so I typed out a quick response pleading with the woman to find a therapist, and fast. But I’ve had a moment to think about her situation and I’ve decided to write a letter. This blog post is for you, and for anyone else who has just joined the world’s shittiest club.

Welcome, dear friend. No one wants to be a member of this club, but here we are. It is a club of grief, and you’ll be a member for the rest of your life. I’m not trying to start this off on a bad note, I’m just calling it like it is. Keep reading.

You are now in the absolute very beginning stages of grief. Take comfort in the knowledge that this is the worst, most horrible time. While you still are likely shielded with a heavy dose of shock, the state you’re in is so raw that I’m actually cringing right now just thinking about it. It’s hard for me to even think about those early days. God, the pain is so unbearable. This is the worst of it.

You told me that you couldn’t eat. Yea, that’s normal. I lost a ton of weight during that time. I remember someone telling me I looked great. How utterly awful. I had to make myself eat. And being pregnant, you do, too. Pick the absolute most delicious comfort food. I know, nothing sounds delicious, but pick something you thought was delicious before your child died, and eat that. For me it was In-N-Out burger. I found that once the food was in front of me I devoured it. I didn’t realize how hungry I was. Sometimes that meal was the only thing I ate all day. Nourishing your body seems so unnatural when your child is dead. But if you starve yourself so bad you get sick, you’ll feel even worse than you do now. And I don’t have to tell you that the teeny person inside of you really needs your care, now and always.

If someone offers to take you somewhere or do something “to cheer you up” just do it. Just go along with it if you can. If you smile once, or chuckle even one time, it was worth it. Don’t feel guilty, either. Remember, you’re dealing with the worst thing that could ever happen to you. You deserve to enjoy things.

Your hormones are all over the place, so throw away any crazy, unsafe thoughts and get some therapy. Very few 30 week pregnant women are in their right minds anyway, so the fact that you’ve got child loss to deal with too is no joke. Getting help is something I cannot stress enough. It is imperative to your well being and the well being of your surviving children.

Speaking of children, when the new baby comes it is going to bring a whole host of new issues. Take your grief right now and add a debilitating level of exhaustion onto it. Scary, right? Those first few months are going to test you like nobody’s business. I don’t know what your support system is like, but do whatever you can to get help with the baby so you can rest at all. I know, you’ve got another young child to watch. I did, too. I’m not going to tell you that I had tons of help, because I didn’t. My husband was at work and I had no friends who had time to come over and hold the baby so I could take a nap. I had some very low moments. It was awhile before I was sure I could do it all.

Google “I lost my child” or “my baby died”. I want you to read all the posts of people who just want to die because they were never able to get themselves together after they lost their child. They never stopped to be grateful for the children they still have, or the good things in their life. After their child died, they died, too. Although their hearts still beat, they’re gone to their family. They’re gone to the innocent children who have no one to be present for them. They’re gone from their spouses, who are also grieving horribly. Count up how many times you read the phrase, “I can’t wait to die so that I can go be with my baby in heaven.”

After you’ve read those posts, tell yourself you aren’t going to go down that path. Tell yourself that you will love your beautiful child until your last day on earth. Tell yourself that you will love your surviving children, your family, and yourself. Don’t die with your child. Don’t allow your living children to lose more than they already have.

Things will get better. They won’t get better by themselves, though. You have to want it. It takes work to not just give up on life. I know, in your early days you can’t see it yet. That’s OK. Just let yourself be raw. Take these next 10 weeks you have while pregnant to be your most raw self. I spent 3 months researching how to turn back time. I really did that. And I don’t regret it. It was a path I needed to take. I was sure someone could right this terrible wrong. What happened shouldn’t have happened, and someone needed to fix it. I finally realized that I needed to fix my heart. If I didn’t, I would die, too.

I am still fixing my heart. I know this is going to sound treacherous, but I’m only 2 years in. 2 years in this business is not long at all. You grieve for the rest of your life. But the grief changes over time. I shudder to think of being 2 months in. I am so much better now than I was back then. I still have my dips and valleys. I’m nowhere near where I want to be. But I have hope. That hope drives me forward. I know what I’m writing might sound depressing. The thing I can’t convey on paper are the joys that I’ve experienced since my son died. The beautiful moments with my children, the myriad of times where I have felt pure joy, have laughed my ass off and have been 100% sure that my entire family can get through this journey with flying colors. That success is there, and I’ve seen it in other people who have lost children just like we have.

There will be times, especially over the next year, that you will be totally underwater. Don’t drown, like so many other parents have. You don’t have to live like that. Drowning and throwing your life away does no extra service to your child who died. It doesn’t make you love them anymore than you already do. It just makes an enormously horrible thing that happened even worse.

There is hope in the world. There is joy. You have to want it. You have to want it as much as you want your sweet child back.

Posted in Newly Grieving | Tagged , , , , | 1 Comment

Why Gardening is Important

It was 2010, and my husband, daughter and I had just moved into our home. The home was spectacular, and one of my favorite places was the garden. My husband and I would get into the hot tub (a hot tub!!) at night and talk about how it felt like we were staying at a vacation house. Dozens of strawberries dotted the terraced garden along with 8 different colored roses. An 80 year old dwarf lemon tree was a testament to the garden’s success. It felt magical being out there. I would talk to my mother on the phone and slowly pull weeds, removing any speck of whatever I didn’t want in our special place.

Friends came to visit and I would proudly show off our garden. I took a lot of credit for the way it looked because of my dedicated weeding game, but honestly, we bought the place with the backyard looking on point. A married couple we have known for years came by for the afternoon one day. The wife of the duo is an incredible gardener. She pointed out various types of plants, none of which I can remember now. I asked her if she could identify bunches of little white daisies that were cropping up everywhere.

“What are these? They’re everywhere and they’re so cheerful!”

“Oh, those are weeds.” I felt a little foolish for not knowing that. But I refused to pick them during my phonecall-weeding excursions. They looked too happy, springing up everywhere they had a chance. No, I would spend time taking out those little bits of grass and those god damn weeds with the stickers that attach to your clothes.

I got pregnant with Jay, had Jay, Jay died, got pregnant with Floyd, raised Floyd for one year and here we are now.

The years 2011-2015 were filled with many things, none of them gardening related. Our backyard splendor slowly disappeared. Some of the rose bushes died, our strawberry patch is, well, patchy at best, weeds have cropped up in every nook and cranny and once healthy, robust bushes have turned into dark brown, dead masses.

Yesterday and today I spent Floyd’s 2 naps outside weeding the hell out of our property. It’s been so long since I’ve really even looked at our garden. I started thinking of our backyard as my head. There’s just a bunch of crap that’s grown out of control lately. Fears and anxiety have overgrown so deeply that I can’t see the goodness that was planted long ago. Negative thoughts have gotten so tall, the roots deepening with each passing day, that they’re taking the water from the good things I used to tend to.

I filled bag after bag after bag of dead shit, long grass with roots that reach to the depths of hell and thistle that will make you utter the C word too many times. But my mind was quiet. I’d pull up grasses and then wait patiently while spiders with white bodies scrambled out of the way before I scooped the remnants into my bin. I thought about how I was making my garden simpler. Removing waste so that I could see what was planted on purpose. The good things that were intentionally planted so long ago were still there, just hidden.

Minds must be tended. Some things should never be planted, but when they are, don’t water it. Take it out. Random plantings will sprout up like they do in any garden. If you don’t stay on top of them, they will grow and spread until it’s hard to see anything else. It might even be so invasive that some of your good plantings will suffer terribly.

There is still a lot of work to do in my head in the garden. But it’s getting cleared. Good things are slowly being planted. And those cheerful little daisy weeds? I still keep those. Not every weed is a bad one. Just stay away from those fucking stickers.

Posted in Staying Alive | Tagged , , , , | 6 Comments

Vaccuum

One of the scary side effects of PTSD is having these “trigger moments” that will destroy your day, week, month.

Last night’s trigger moment: Watching Interstellar. I’m not going to spoil it for you if you haven’t seen it, but if you’ve lost a child, proceed with caution. There are black holes, wormholes and a whole host of other stuff that can be a little too much to take if you’ve spent time missing a child and hoping to turn back time.

Absolutely none of this movie has anything to do with my life, but it gets the wheels turning. I think about dying, I think about my daughter dying. I think about how nothing can stop the dying process. I think about all the terrible things that happen in this world and that none of it is fair. It’s like a game of Chutes and Ladders: complete bullshit, and no amount of skill will help you win the game. It’s just luck, or lack thereof.  The part that blows my mind is that everyone on this Earth knows this on some level. Your time is going to be up one of these days. It could be today, it could be tomorrow, it could be in 60 years. Nobody knows! And even though this is a known fact, everybody seems to be able to get up in the morning, get ready for work, have some coffee, play some Candy Crush and go on as if they’re going to live forever.

Most of my life is spent in that happy pocket of denial. I love being there. My mind is never far from Jay, but I can put it in a place in my mind that allows me to go about my day to day. I can still enjoy the luxury of focusing on minutia. I can use my grief as a tool to help me appreciate the special moments with my children on a level I don’t know that I could before. But there’s a line that’s crossed sometimes. You can appreciate those special moments so much that you become acutely aware of how fleeting it all is. That moment of appreciation can become so intense that you slip into the black hole. Once you’ve been sucked in, it can be tough to get out. The reason you find it hard to get out is because you know that everything you’re afraid of, your worst fear, is completely true: One day this will all end.

This thought is crippling for those who have lost a child because we’re unable to live in denial on the level that everybody else is on. We have already pulled back the covers and have seen life’s underbelly. We know what’s coming better than people who haven’t been through what we have. The droves of people who rely on statistics and try to remind us that the odds are in our favor for survival simply do not get it. They do it to make us, their loved ones, feel better. They do it because they believe that everything is going to be alright.  We were robbed of that feeling when we experienced something that went all the way wrong on a level we had never seen before.

That experience will never go away, but how do we move through it? Can we ever get back on that level that other people are on? One piece that has helped me is to make myself accept the fact that the worst can happen and pretend that it’s not a big deal. It’s the old, “Yea, we can die any second, so just love every minute of your life and get on with it” philosophy. At the moment I’m too far gone to do that, though.

The thought of life ending is so sad that I’m unable to enjoy the life I love so much. That’s a shitty little bit of irony, isn’t it?

I’m so angry that this happens to me. Life is hard enough without having to trudge through an overwhelming fear of death and future imagined trauma. I’ve already lost a son; can’t I just enjoy the life I have left without having to fuck it all up with the fear of something that hasn’t even happened yet?

I guess that’s something to hang onto: this happens to everybody. It’s easy to feel singled out when you’ve lost a child. It’s easy to feel like a sad statistic, especially when some well-meaning-but-completely-unhelpful person says “We’re never supposed to bury our own children,” indicating that what happened to us is an anomaly, making an already isolating experience even more so.  But we all die. The only unknown is when. Some of us live long, healthy lives, some of us die before our children have had a chance to grow up. What is the use of hoping and praying that you’re the former?

All I want to do in life is to be there for my children and have some fun in the process. That’s it. Have a good time and be there for the kids. I want my daughter to grow up having some hope. If I die, her level of hope will be decreasing for the third time after losing her brother and then her grandmother. That’s really where my fear lies. I am terrified to my core over her emotional well-being.

How can I harness that fear? I can be there for her, everyday. I can be a role model for strength and survival. I can teach her to enjoy the small things. I can teach her to hope, even when all seems lost. I can teach her how to move through difficult times. I can remind myself that if I freak out too much, she’s going to pick up on it. If I’m not OK, she’s not going to be OK. And when bad things happen, as they do in life, I can do my best to give her the tools to deal with it. My job as a parent isn’t to remove all bad things from my children’s lives, because I can’t. It’s to teach them what to do when those bad things happen.

One thing I try to do before I publish a post is to wrap it up. What did I learn about life with the experience I shared? How have I furthered my understanding of grief and trauma? I don’t have a neat little bow on this one. I’ve been sucked into the black hole for the time being, and so far, am still trying to dig my way out.

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The Great Wean Of 2015

I walked up to the nursing station in the pediatric ICU and leaned against the counter. The nurse peered over her computer monitor at me.

“I need to use a breast pump,” I said.

This was probably the third time I had asked for one. On the way to the hospital, I, for the first time in my life, tried to have a positive attitude. I tried to think optimistically. We would arrive at the hospital, be shown to his room, and he would be laughing and playing with the staff. They’d chide him gently and tell him that he was just a little rascal for kicking his chair back. They’d tell us that they’d seen this a thousand times. And then we’d drive home with him. It would become this story about how we had such a big scare. “Silly old Jay. Do you remember when he kicked his chair back and got knocked right out?” We’d say. I had a mantra in the car ride over. My husband sat silently while I drove. I said to myself over and over again, “I will be nursing him tonight. I will be nursing him tonight.”

People like me who have a tendency to worry do so out of a sense of power. We think that if we worry ourselves to pieces, something bad won’t happen. But I saw something at the local hospital before Jay got transferred that changed that for once. It was a sign near the bathrooms that said, “Positive thinking works!” That’s it. I thought, “If there’s a time I should try thinking positively, this is it.” So I did.

That didn’t work. Maybe I should have worried myself shitless like usual.

By the next day, I knew already that I’d never nurse him again. I had stopped eating and drinking anything, and the extreme stress made my body stop producing milk. I have a tendency to get mastitis on the regular, so I couldn’t take any chances. I had to get whatever milk was in there, out.

The nurse behind the counter finally got someone to get a pump. A young woman cheerfully arrived with it. I looked across to the opposite side of the nursing station and there were two well dressed men sitting outside my son’s room. These were the detectives that drove 3 hours to interview my husband and me. They saw me, but were busy chatting to each other. Their demeanor was soft and easy, but I knew why they were there. I didn’t care that they were waiting. They could wait a little longer while I pumped milk out of my body that was made for my brain dead son.

The girl took me down a hallway that felt like a mile long. I was sure I wouldn’t be able to find my way back. During our 3 day visit at that hospital, I never managed to navigate it successfully. She took me to a tiny room, plugged in the machine and explained how it worked. It was different than my machine back home. It had a couple of extra buttons, and in my mental state of mind, I couldn’t process how to use it. She closed the door and walked away. I was left standing there looking at this machine totally dumbfounded. It could have been a defibrillator. I left the room to go get her. She had to return and tell me how to do it again. I finally was able to get it going this time.

I pumped for probably 20 minutes. Barely anything came out, maybe a couple of ounces at the most. It was green. It was a horrible, sad, heartbreaking experience. I unscrewed the bottles that the milk had drained into and I poured it down the drain. It was gone, like my little son’s life.

I walked back and returned the pump. Then I went to sit down with a detective so that he could interview me on whether or not I killed my son.

Fast forward to the other day, when a good friend told me that they liked the blog post 108 Saturdays. In that post I looked forward to the time that Floyd was older than Jay. She commented on how it must feel nice to be at that point. I concurred, but in my heart I didn’t feel it. Floyd is indeed older now, but I still felt like nothing had changed. I didn’t feel like we had moved into a new era. I mentally concluded that maybe I’d never feel that way.

Over the last several weeks, I have started to wean Floyd. At 14.5 months, I feel like I have done an amazing job nursing him. I feel I can draw this era to a close, and this time, the weaning will be done naturally. I dropped his feeds down to 2 a day, then 1, and as of this morning, none at all. My husband got up with Floyd and dressed him instead of me taking him back to bed to nurse and snooze. He and my husband emerged from his bedroom all smiles. He was so excited for his scrambled eggs he literally shook with excitement. I initially felt terribly sad at the realization that I would no longer make milk for my child. It is truly a gift to do that. Growing food from your body is pretty amazing. That physical connection would be gone. I had a brief moment of regret and considered nursing him after breakfast. “There’s no need to quit! I thought.

I then remembered my daughter, when she was little and I had already weaned her. She was about Floyd’s age, maybe a week or so younger. We had such a great time together when she was a toddler. I loved that time. It was then that I realized that weaning Floyd was the change that needed to happen for me to feel like we had moved into a new era. I never weaned Jay. It just stopped. Weaning would have been the natural progression, a milestone of growing up. Floyd will be able to reach this milestone and move into a new phase of childhood. I could move through this process and heal myself a little from what happened last time. This is the thing that should have happened, but didn’t. I looked at Floyd, sitting there eating his eggs happily. “This is it,” I thought. “We’re ready.”

Posted in Having a Baby After Losing a Child, Raising Your Living Children | Tagged , , , , , , | Leave a comment